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long term TN survivor story please

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kmartin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2009 at 5:35am
Yes, both were dx with TNBC...and neither has had any recurrence.
 
Sorry for the delay in response time,
 
Kathy
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jody Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 6:29pm
I am aware of two women both nurses in Southern California that had tnbc.  One was diagnosed 12 years ago (and since verified that hers was in fact TN), the other 7 years ago.  Both women are cancer free,  Unfortunately I do not know what their stages were at diagnosis, they are actually co-workers of my cousins who is also a nurse.

As for myself, I am no where near long term, however it has been 1 yr and 3  months and so far so good....
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 2:50pm
I got CMF.  Cytoxan, Methotrexate, and 5Fu.  It was 'gentler' and my oncologist felt that I'd be cured after the lumpectomy, chemo and a breast irradiation.
 
Turns out, that was probably a good thing in that I didn't get Adriamycin as my heart is still relatively healthy.
 
Of course, after 4 years in remission, I had a recurrence, but I believe that is because instead of a full lymph node removal, they just did a sentinal node biopsy and evidently there was more than one node. 
 
That's why I believe you have to be aggressive with TNBC, especially if you are BRCA+ like me.
 
Cheers,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 11:26am
hi Carynrose
May I ask what kind of tx did you get for your orginal dx in 03?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2009 at 9:24am
I don't know if Icount as a long term survivor.   I keep asking my doc from when should I start counting.
 
I was first dx'd in June  2003, so I guess I'm a 6 year survivor.  Of course, I am Stage 4 and I live with cancer everyday.  At the moment, I'm dancing with NED and the stable boy (thank G-d).
 
Is 6 years good for TNBC, Stage 4?  I don't know.  But I have no intention of leaving here anytime soon (please G-d).
 
Caryn
 

Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 10:53pm
Hi Kathy
Was your boss and aunt also TN? It must be good to know them personally to chat and get encouragment.
My dx was 1 cm tumor TN and 1mm micromet in one sentinal node. I had mast. and dd EC and 12 weekly taxol and carboplantin and then radiation.

I often hear ER positive women with early stage live 20 yrs or longer but for TN I do not hear so many long term survivor stories. TN dx scares me.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 10:49pm
I tried to put my dx at signature but I dont know where and how to do it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:27pm
Hi NewAlex,
 
My encouragement comes from knowing 2 five year survivors...my boss chose to have lumpectomy, CT and RT, and my aunt had bilat mastectomy and then AC, T, and RT...both are 5 years out and no recurrance at all.
 
Kathy
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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rena View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 4:55pm
Hi Alex! The ladies are probably tired of hearing my story by now, but you were looking for encouragement, and I've got some to give. I was diagnosed in 1986 with ER/PR-negative breast cancer. There was no HER test back then, so I was not labeled "triple negative." But my oncologist is certain that I was since I fit the profile: 37 years old and BRCA2-positive. I had 22 positive lymph nodes and am coming up on 23 years cancer-free. I suspect that there are many long-term survivors like me, who don't know that they were triple negative because that label didn't exist way back when. There is lots of hope out there and a lot of good, healthy life to look forward to. Take care, Rena
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 11:10am
Well Sharon,
 
I'm catching up with you !!   My year from hell was in the spring of 2006.  Couldn't take the chemo due to complications, but my bil mastectomy seems to have done the trick.  I've had scans every 6 months and been NED every time !!   Working toward my 4 yr anniversary now..................  
 
Having no treatment other than the mastectomy was scary and really concerned my doctors, and I can't say I lead a charmed life.  It must be that all my cancer cells were localized in the breast --- or maybe all the vancomycin I took for the MRSA killed them -- almost killed me !  LOL
 
I feel sooooo fortunate to have gotten this far.  Just this week I compared my pathology findings to those of someone else with ER+,PR+ BC and my prognosis was much, much worse.  It's amazing I'm NED.   Thank you Lord!  Thumbs%20Up
 
So NewAlex, I wish you all the very best.  Please post your signature to let us know your TNBC details and experience so far --- we love to know what's going on.  I'm proof that one CAN survive even when the treatment is compromised.
 
Hugs,
Jessie
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 8:55am
hi Sharon
Did you have any family history? How old were you at dx? Was the tumor grade 3?
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sharon rereg View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon rereg Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 8:50am
Dear Alex--I never knew exactly how many nodes, because I did neo-adjuvant chemo. But there was one palpable and positive at the time of biopsy.

Sharon
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 6:14am
Sharon
So good for you. You must be really happy. I hope I will be like you too. What was your dx and how many nodes were you positive?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon rereg Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 5:24am
Hi Newalex--I think I replied to you just a little while ago, so am "old news", but I have a recent piece of positive news. I saw my onc for the 6 month check up this week and she "graduated" me to yearly check-ups. She says I'm cured. Her experience is that if TN is going to morph into distant mets, it always does it within 4 years, and usually much sooner, being as aggressive as it is. It still can pop up as a new breast primary or recurrence in breast tissue. As you'll see from my signature I did the full "slash, burn, poison" routine, so I don't have much breast tissue left to worry about. That's a very personal decision, though.

I hope this helps.

Sharon
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Jul 31 2009 at 3:20am
We are all scared as newbies and your long term suvivors please come to post and offer encouragment. Your story mean so much to the newbies and please come and help !
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